In A Nutshell

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Despite being diagnosed with Fibromyalgia about a decade ago, I was able to work and lead a "normal" life, until I became severely ill with MS type symptoms one month after being laid off in June 2009, which meant no health insurance to properly address the problem. I spent 3 days in the hospital but since they initially did not want to keep me (one doc said I may have MS, but was overruled), I did not qualify for the financial aid for hospital bills because they did not think I belonged there. I was misdiagnosed with Labyrintits and sent on my way. I was told it would go away in a few weeks, that was 3 years ago and I have had the symptoms of dizziness, balance problems, vertigo, and pain every day since then. I went to a local free health clinic until they told me they exhausted all their options and could not help me any longer. I cannot drive nor work outside the home and only walk briefly with the aid of a cane, but also can't get disability because I have no real diagnosis for these particular symptoms. These are the chronicles of my (so far) dead-end journey riddled with bodies of good intentions.

Sunday, February 5, 2012

What's in my Head

I never cease to be amazed at how I uncover information that is relevant to me as an individual when doing research for articles I have to write. A few weeks ago, I had to read up on something that was related to different massage therapies for a client. Among those I found one called myofascial release, which treats myofascial pain. What is all this? It is a massage technique that works by applying "low load" pressure to the myofascial connective tissue that gets stuck together in order to restore motion and get rid of pain. Huh?

In a nutshell: Our bodies have a soft tissue just below the skin called superficial fascia. It connects all our nerves, muscles, bones and blood vessels. Fascia and  muscles together are called the myofascia system.

According to Dr. John F. Barnes, myofascial pain is classified as: "Trauma, inflammatory responses, and/or surgical procedures create Myofascial restrictions that can produce tensile pressures of approximately 2,000 pounds per square inch on pain sensitive structures that do not show up in many of the standard tests (x-rays, myelograms, CAT scans, electromyography, etc.)" Read more about it on the Mayo Clinic website. (It's funny how they recommend to see a doctor for it).

This applies to me as I was diagnosed with myofascial pain syndrome years ago by a chiropractor. Why did I never research it before now? For one, no one around here takes a diagnosis by a chiropractor serious so I never gave it much thought. Secondly, it's just one of a laundry list of conditions and doctors tune out by the time they hear the word syndrome. They are much more likely to listen, and lecture, if you if have visible problems, like obesity.

Lastly, I figured as long as I was going there he would "treat" it with whatever he was doing. Little did I know that he didn't, nor did he ever talk to me about how to treat it. Why diagnose me then in the first place and why am I bringing this up now, years after stopping chiropractic treatments due to financial reasons?

Well, I like to face my demons and drag them out into the light, and I can't do that without naming them. Mine have mostly medical names, and this one just happens to be one that's joining the ranks. Also, others with the same diagnosis may gain an understanding when reading this. After all, no one (outside 12-step programs) goes around introducing themselves with: "Hello, my name is and I have MFPS." Or FMS, or CFS, or diabetes, or rheumatoid arthritis, or whatever.

And last, but not least, I am now prepared to have an intelligent explanation when the next doctor tells me again "the pain is in your head." Besides, "normal" people like facts and figures, and 2,000 pounds per square inch of pressure is a good description of what this pain feels like.

Wednesday, January 18, 2012

The Battle Rages On

Well, this morning I had my appointment at yet another health clinic for my "assessment." (refer to this post).

I must admit, after my prior bad experiences with "free" clinics and the "system" in general, I came in expecting the worst and with my virtual Xena armor firmly in place. Arriving 15 minutes early, despite knowing how this works (when is the last time even a regular doctor's office has processed you on time?), my bad suspicions seemed confirmed when they asked me if I had already filled out my paperwork and if I had my prescription bottle on me.

Since they had only told me to bring financial documentation to this appointment, I thought to myself: here we go again. After some word-wrangling and my explanation of the above, they gave me the paper work and I sat down to fill it out.

Half way through, I stopped, read again, and had to start laughing. Other people stared at me, but I am used to that anyway. Walking around with balance problems and a cane has gotten me used to that. What was so funny? Well, the health questions. Did they ask me about cancer, smoking, diabetes and all the usual suspects? Nope. The first question was: "have you had sexual partners since 1979? If so, more than one?" From there it got better: "Have any of your partners done IV drugs, are any of them bisexual?" There was more, but I must have blocked it out because I can't remember the sordid details. And this was just the financial screening, not a health appointment!

The following page had me in hysterics again: I had to sign off on a statement that said: "We are committed to treating you with the ultimate dignity ..." Again, I can't remember the rest, probably because I was laughing so hard. Whether it was that or my loud comment "dignity is for people with health insurance," they saw me right after I dropped the paper work off at the desk, despite a full waiting room. I bet all the other patients were glad.

The intake specialist simply looked over my paper work, asked some other, less probing questions, and I was done. I have my actual first doctor's appointment February 29, that is the first available time slot they had. They did write me a prescription for my thyroid medication because I literally begged because I have been taking way less than I am supposed to to stretch the dose. What happens if you don't take it? Well, it's not pleasant, but I digress.

Free here, like anywhere else, does not mean free of course. I was informed that I would have to pay for my own specialist tests (so much for trying to get a diagnosis), and prescriptions.

It isn't that I am expecting anything free. And, to silence the other tax payers who do not want to pay for "riff raff": Yes, I do still pay taxes on my writing income. I simply expect those who do not need these services to stop telling me that I can get "free healthcare," if I just looked. Also, this is Crossover Ministries, a faith-based organization totally dependent on donations.

Regardless, I went to get my thyroid prescription filled and I am grateful for the services I received today, even though it takes away from more important things in my budget. What is more important than health, people may ask? Good question.

Wednesday, January 11, 2012

The Difference Between a Hand Up and a Hand-Out

"As we go down life's lonesome highway
Seems the hardest thing to do
Is to find a friend or two
A helping hand
Someone who understands" (Lionel Richie)

I am not expecting the government or any organizations to be that friend. However, it does not take a friend to offer a hand up. The news lately, among the usual daily gloom and doom, has reported stories where strangers pull people from burning cars and submerged vehicles, without a second thought, proving that human decency is not extinct yet.

Unfortunately, as more people in the U.S. are at the end of their allotted unemployment benefits (becoming 99ers), they aren't the only scared ones. The ones who have a job look at people like myself and seem to mask their own fear with a sort of disdain. This shows in comments I often read on social media and hear in interviews, which include something along the lines of "I do not want my money to pay for the ones who do not work."

Is it subconscious fear of losing their jobs and becoming like us, or is it because they do not get compensated enough for the work they do? I remember those days, just before my layoff, when raises were non-existent and the only pat on the back you got was "be glad you have a job." And no, this is not about 99 percent or one percent or a baker's dozen, or whatever. It's not about numbers, it's about people. It's the type of comments that I've mentioned above that kept me in the closet for a long time, before I had the courage to tell people about my situation.

Now, let's examine private insurance. Think about it: We all pay or have paid money for car insurance, health insurance or life insurance. Let's use the first example: Even those of us who have no car accidents, still pay insurance. The money the good drivers pay goes towards paying out benefits of those who have accidents and towards share holder profits - it's simple economics. Same with health insurance. The money we pay in, but don't use, either ends up being used for other insured people, or as profits for the company. People have no problem that private insurance companies make profits, but no one wants to "pay for people who aren't working."

Well, what about our money that we paid into taxes and benefits? Many who are jobless or disabled have been contributing members of society for many years. Besides, the money I make now from writing is still taxable, so yes, I am still paying taxes. However, it's not enough to live on. Ironically, my efforts at making money are hindering me in obtaining help to get my illness diagnosed and treated. Yet, the illness keeps me from making more money or working a better job. If I could, I then could spend money to boost the economy. On the other hand, I do not trust the government any more than I do private organizations who make millions in profit. Where is the answer then?

There is a saying I've adopted: "There are two sides to every story, and then there is the truth."

No, most people, like me, do not want a handout, simply a hand up.

Saturday, December 24, 2011

Salvation Army, Act III

(Read up on Act I and Act II)

It seems I can't get away from the Salvation Army. From the holiday commercials, to emails in my inbox asking me for donations, to its presence on Facebook. See, my local news station, WTVR, has been running regular giveaways on Facebook that I have been entering. What the news station does is post links to merchants, you like their page, and then enter for whatever it is they are offering. Of course I have not won anything yet.

Imagine my surprise a couple of days ago when I saw a link there to the Salvation Army. Sure, I have seen the Salvation Army's prior pleas on the news site asking for donations. My posts to them about being turned down for help (they are advertising 40 programs when I was told of only 3) went of course unanswered.

Anyway, this was different. They are actually running a giveaway. Huh? I checked the page out because I was wondering how they could afford to give stuff away, when I was turned down for help. I even had the beastly idea of entering. It is not the prizes I am after (they are tickets for events I would not be able to attend anyway).

No, since all my emails and posts from me to them, asking to explain about their discrepancies in advertised services and what I was told, are being ignored, I figured it would make for good irony if they finally had to deal with me, if I won something. Alas, I decided against it. Let someone win the tickets who really "needs" them. Besides, my name is probably on some kind of blacklist by now anyway.

Thursday, December 8, 2011

Celebrating Life

What would you do on your birthday and do you remember your milestone birthdays? While there probably are as many answers as there are people answering the question, one item probably would not make the top of the list: blogging. Yet, I chose to do that for my 44th birthday.

The funny, or sad thing (you decide) is that I can't remember any of my important ones, not the 18th, not the 21st, not the 30th. The one thing I remember about  my 40th is that I received a phone call saying I may have cervical cancer. Further tests revealed that I did not, luckily.

So, since none of us know if we'll make it to the next one (not being morbid, just saying that we should be grateful for each day we have) I decided to launch this. I should have done this from the beginning, but as they say, it ain't easy.

Wednesday, December 7, 2011

Dignity is for People with Health Insurance

It's time to try a new avenue once again. I am at the end of my thyroid prescription. I made it last twice as long because I only take half a dose. Yes, all medically trained people will yell at me for that, but it is what it is. Can't just call in a refill, because you have to see a doctor regularly because they will only give you so many refills. Plus, I still have to pay for the prescription. However, my paperwork for the free clinic expired a while back. Despite what  many may think or Dr.Oz says, you don't just walk into a clinic. You have to make an appointment first for a financial intake, then, if you qualify, make a separate appointment. Often just obtaining the first appointment can take months.

I wanted to see if there was another local free clinic because the one I went to said they exhausted their options in regards to trying to diagnose my balance and vertigo problems. I went online and saw another one (Crossover Ministries), so I called it. Much to my relief, she simply asked me a few yes or now questions.

"Do you have any income?"

"No." (It's much easier to say that than explain that I make money by writing, but not enough to make a living really. I do tell the whole story at the actual appointment, I found it's better this way)

"Did you file taxes for 2010?"

"No." (I did the calculations, but found out I would only get back $48 dollars so did not file for that year)

"Is family financially supporting you?"


"Are you on food stamps?"


"Are you on Medicaid?"


That was it, luckily she did not question any of my answers and I got  my appointment for January 18, 2012, the earliest she could give me. I told her I would run out of my prescription before then, so she gave me the number for Care-A-Van. She said they provide services, but move around to different locations each day and as soon as I found out where they would be, I should immediately show up. I can read and hear between the lines, so the translation probably is:  "Lines will be long, there are no guarantees that you will be seen, and please leave your dignity at home."

Since I have to find someone to drive me there, I have put that option on the back burner as I do not want to subject someone to that inconvenience unless I absolutely have to.

Sunday, December 4, 2011

Oh Snap

Now, I am not a person easily offended and I like to think I have thick enough skin. After all, as a writer that is almost a requirement because constructive criticism is the salt in the spread that butters a writer's bread. But, I was really put off when I saw the following tweet by one of my "followers:" 

I think Food stamp card is called SNAP cause the person next in line thinks. "oh SNAP!! she is paying with MY MONEY!!!

Even if it was meant as a joke, there is nothing funny about that. Besides, many of the people using food stamps have been contributing members of society or are even still working. Read about it on Reuters.

I looked up the sender and she is a registered nurse with a Master's Degree. While I know that the right thing to do would be to just ignore and forgive the ignorance, I can't help but wish a situation on her that will make her have to use food stamps one day. All it takes would be one tree through her house, one layoff, one divorce, or one illness.

Who would be saying oh snap then?

Thursday, December 1, 2011

Which Circle?

My daughter once had to do a creative writing exercise about Dante's Inferno and create nine circles of hell. Ever since then, we both have assigned government organizations their own circles. The Department of Motor Vehicles has one, so do the Unemployment Office and of course the Department of Social Services.

Despite knowing a lot of how the DSS works (not a fact I am proud of), it's always the first avenue people and organizations recommend, like they are some kind of miracle worker or something. The experience you  have depends on whom you talk to (most seem to hate their jobs and workload and it shows), but the end result is the same. They can only abide by the guidelines.

In Virginia, in a nutshell the guidelines are this: You can only get medical insurance if you are pregnant or have children under 18, same with cash assistance. Of course they don't tell you upfront, you have to go through the 15 page application and the interview. I put them somewhere between circles 5 and 9. Then again, once in a while you get a good caseworker who shows compassion, but of course it all leads to the same. After all, they have to abide by the guidelines. I wonder what's the lower circle: Having to work there or having to apply?

Tuesday, November 29, 2011

Today’s Dr. Oz Topic: Are You One Paycheck Away From a Foodbank?

The other day it was on the TV show “60 Minutes,” today on Dr. Oz : A documentary on the new face of hunger in America. I speculate these shows are to show those who are not in that position that most people who do have to rely on food stamps and food banks are not lazy, nor are they illegal immigrants.

Nope, a lot of them are people like me—hard working individuals who downsized already until there is not much to take away and who have lost their jobs or who struggle with rising prices while wages stay stagnant. Also, they feature people who previously gave and donated, but now find themselves in a position to have to ask for charity. These shows also illustrate that it can happen to anyone, regardless of how much money they have now, or had before.

These shows evoke different emotions in me. I know I should not watch because the stories I hear are sad. Also, in the case of the ones who have it worse I feel guilty that I still have more. Then again, the ones who have more and rely on help make me wonder and debate if they should not have waited until they have less. Then I feel guilty for being judgmental.

But, there is also a strange kinship, like when they talk about the embarrassment it causes to use a foodstamp card or to walk into a food pantry. I still keep my foodstamp card face down when I take it out to swipe it, as if I am fooling anyone! The clerk knows. But, I figure the people behind me need not know. Even just a few weeks ago I would have never talked openly about having one. I suppose denial equals a semblance of dignity.

Anyway, at the end of the Dr. Oz show they gave a phone number for anyone who has trouble getting food. I haven’t called it so am not sure what services it links to, but here it is: 1-866-3HUNGRY

Beating a Dead Horse

Early this morning, and I do mean early, I received a call from Mayor Wayne from a local Salvation Army branch. This was a follow up on an experience I had when contacting the Salvation Army recently to ask for assistance. I was told I did not qualify because I was not pregnant nor had children under 18. (For more on that, see this prior blog entry.)

First of all, Mayor Wayne said they did not EVER tell this to people inquiring about assistance. I really did not know what to say to that because I am sure that is what they told me – unless I was having a big Fibro moment. He quizzed me about my situation and in the process he figured out they may have assumed I was asking for a homeless shelter and then he said that yes, their shelter only accepts pregnant women and children. Mhm.

He did explain that their services included food baskets, help with utility bills, and they could help me if I owned a house. Well, I told him I was waayyy beyond losing the house (had I known then …but I figured as a homeowner I certainly would not take up resources that should go to less fortunate people than myself). Also, since I lived in a hotel now helping with a utility shutoff notice would not work as my financial issues were not related to that.

Then came his inevitable questions I had answered before many times:

“Have you tried the Department of Social Services and applied for Medicaid?”

Out comes my answer that by now sounds like I simply rehearsed it:
“Yes, but Medicaid is only for pregnant women and children under 18. Same for cash programs.”

“And you can’t work?”

“Uhm, no, I can’t drive, walk, sit or stand for very long.”

“There are free health services, I can refer you.”

Good thing it’s not a video phone call as I roll my eyes and launch into the spiel how I already did that and they were unable to diagnose me because it’s beyond their limited resources. If I could simply walk into the Mayo clinic, like famous people do, believe me, I would do it. Alas, I keep that last thought to myself.

“Well, you need to get on disability!”

I am not one given to uttering expletives, but what wants to come out is something along the lines of: “No ….!” Instead, I politely do what I call the “Ring Around the Rosie,” or perhaps I should call it the White Elephant.

I explain once again that while everyone who looks at me knows that, but since I have no proper diagnosis I can’t file, and I can’t get a specialist who can diagnose me without health insurance. I can’t get health insurance because I can’t work and I can’t work because I have debilitating condition.

I had contacted one of those firms you see advertising on TV who supposedly help you get disability and this is what they explained: The SSA does not determine a disability based on what they can plainly see, that would be too simple, there is a process involved, every one knows that, and they are not exactly keen on handing over money. 

And, you MUST be under a doctor's care to show that you have an interest in getting better. My question about how to obtain one without health insurance was basically answered with that that was my problem. Besides, before economic decline it was hard to get SSI, you think it got any easier? Again, I keep those last thoughts to myself.

Now there is silence at the other end.

In the meantime, inside my head there is anything but silence. I wonder, not for the first time, why high ranking people inside of charity organizations are not familiar with the most basic guidelines of the agencies they try to refer people to.

“Well, let me give you the number to the Daily Planet, call them.”

I thank him and hang up. But, I have a hunch, so before calling the Daily Planet, I look them up to see this:

Safe Haven is a 21-bed, free-standing facility that offers transitional housing with comprehensive and integrated health and support services for individuals suffering  from severe mental illness coupled with chronic homelessness. It provides 24-hour staff supervision and guidance with the ultimate goal of transitioning clients into permanent housing and independent living. By referral only. For more information about referrals, please call ...

Just by reading that I can see I do not qualify. I will call regardless, but …what is that saying the Native Americans have: “Once you discover you are riding a dead horse, you should dismount”